Millie

I have been taking 22 mg of chelated zinc daily for about 3 months now and don’t feel any different. I am using oxygen 24/7 but don’t feel like I have anything. My breathing is good and I have boundless energy. I was diagnosed 1 year ago. The website pfwarriors.com has information on the correct dosing that was found in a study at Mt Sinai in…[Read more]

Hi Chris: You are fortunate that it was found early on, if that is what it is. Follow-ups are important to check it’s progress. When I was first diagnosed, 1 year ago, I had to go on oxygen immediately. It showed up on an x-ray I had done 4 years ago for something else and I was never told about it. That makes me very angry. I’m taking Ofev…[Read more]

I did it once in order to discuss privately some issues. How else are you going to get someone else’s e-mail without giving it to them on the forum? I didn’t mean any harm.

I don’t really have breathing problems so I can’ answer that. I use oxygen for exercise and when walking. Even when my oxygen drops, I feel fin eand am not out of breath The cuppng and deep tissue massage were to help break up the scarring along with serrapeptase.

I live in Myrtle Beach, South Carolina, and there is a clinic and doctor here who does stem cell therapy. My neighbor is getting it soon but not for lungs. Another neighbor had it, but not for lungs, and has seen great improvement. She had been confined to a wheelchair and now walks and does many activities. The cost is high—-$20,000.

Hi Karl:
I was interested that you said on your post that the lung scarring was there 10 years ago. I recently looked over some old medical results from 12 years ago and noted that the lung fibrosis was there then. However, it was not brought to my attention. Also, 3 years ago it showed up on a chest x-ray I had for something else. Again, I…[Read more]

Amazon has the red light lasers and they look more like heating pads and are reasonably priced. Hooga, which is highly rated, has panels that are free-standing and though more expensive are still within a price that is affordable. I’ve read that this red light laser therapy increases collagen. (It is also supposed to break up the scar tissue.)…[Read more]

I have always been a milk drinker and I find that it doesn’t give me any problems with the Ofev. Another PF patient told me the same thing about milk and dairy products. I tolerate them very well with the Ofev. I also find that Metamucil is very effective in helping with diarrhea. It was unbelievable to me but it really works.

Hi Donald:
What do you mean by immunocompromised? I am on Ofev. Does that make me immunocompromised? Does that make my immune system weaker. Please advise.

Diet is very important as is keeping yourself physically active. I’m on Ofev which is hard on the liver. I no longer drink any alcohol. Abstaining also helps with the digestive problems caused by this medicine. You could see a holistic doctor and see how they can help you with this. Natural remedies are always best but traditional medicine…[Read more]

The 3 to 5 year time frame is just a ball park figure. My sister when diagnosed with heart failure was also told she had 3 to 5 years. There are so many variables. If you have other major health problems, not too good. If your health is otherwise excellent, better outlook.

The bottom line with PF is it’s usual slow progression in the early stages. It is quietly scarring your lungs but you are unaware because it hasn’t caused symptoms yet. Even now, when my oxygen drops into the 80’s, I am symptom-free. Just like cancer, by the time you have symptoms, it is already well-advanced.

Hi Nina:
Don’t be afraid of using oxygen when the time comes. I am on a low dose and have a concentrator in my house with 50 feet of tubing that enables me to get all over my house and front porch and back patio. I am very comfortable. I’m out every day and use the Inogen portable which is lightweight and rechargeable with batteries. Nothing…[Read more]

I was diagnosed in December 2021 but still feel very normal. I do believe I had it for 10 years before symptoms appeared. I used to do a lot of bike riding in NJ—-20 miles at a clip. After moving to SC 10 years ago I got a bike and found that I was out of breath after riding a short distance. I thought it was just old age creeping up on me.…[Read more]

Hi John:
I wouldn’t expect improvement with the zinc formula very quickly. The scarring may have been going on for years. It’s a slow process and improvement will also be a slow process is what I believe. Just have patience and hope for the best. The NAD and sirtuini are available on Amazon. Continue to hang in there. We can’t give up the fight.

Hi J.L. Labrack: My resting oxygen is 93 to 97 but when I walk it drops down into the upper 80’s so I have to be on oxygen 24/7. I don’t really find it to be a problem. I’m out every day and even go to the beach and the pool. I have Inogen portable units. The small one only weighs 3 pounds and I wear it like a shoulder bag. I go to the gym…[Read more]

Hi Yvonne:
I hope you are on a good, healthy diet. That can make a difference. I totally abstain from alcohol. Drinking wine breaks me down and caused diarhhea so I don’t imbibe anymore. Why ask for trouble. Limit sugar intake as well as fats and fried foods. I also take daily probiotics and eat yogurt. Try Metamucil. My doctor recommended…[Read more]

I know I’m joining in on this discussion late but better late than never. I started Ofev with 100mg in the am and 150mg in the pm. No problem whatsoever. Did this for a month. Then moved up to 150mg twice a day. The first 3 days i had diarrhea and threw up several times. After that I was fine for a month. No side effects whatsoever. Then,…[Read more]